Please Believe Me: Living With an Undiagnosed Autoimmune Condition

I have lived in diagnosis limbo for about half my life. Something has been wrong with my body, but until the symptoms are life threateningly pronounced enough, there seems to be nothing that the 40+ doctors I’ve consulted over the years can do. As my undiagnosed autoimmune condition worsens, it’s evident that I have lupus-like symptoms but I do not yet have a diagnosis.

I work full time and also take on a considerable amount of freelance work. I do this because I’m driven; physically I know my body wants to die. Mentally, I have never lost the drive to work hard to live a comfortable life. This contradiction is as frustrating as you can imagine.

My current severe symptoms include swelling, what I can only describe as “lupus arms,” veins popping out, fatigue and exhaustion, back pain, sinus headaches, digestion and acid reflux issues, and arthritis-like symptoms (I can barely hold my keys some days). These symptoms can come and go over night. I can increase or decrease up to four sizes as I sleep.

The Effects of Suffering With No Diagnosis

I wouldn’t wish lupus on anyone. However, I wish I could tell people “I have lupus.” If you have a diagnosed condition, people give you consideration. If you say you might have a condition, they give you lectures about how you shouldn’t say it and then act like it’s an inconvenience when you enlighten them on the process of obtaining a diagnosis. They tell you about their miracle gluten-free diet or a similar condition they have that obviously you should consider yourself as having.

I feel like I have to justify my lack of diagnosis. After all, it’s my body. Why don’t I know what’s wrong with it? That’s why I feel the need to describe and document the steps I have taken.

Whatever this condition is, it’s ended so many things that were already a challenge: even things like marriage, which were sometimes also challenges in the best of ways.

Finding the condom in his pocket was a serious indication that he could not or would not emotionally support me through a chronic illness.

The potentially empowering nature of starting over has led me to this point: having actionable steps to care for my elderly grandmother and my senior dog, but no roadmap for my own self-care.

I’m pretty sure I could cope if I had a little more support and understanding from family and friends. Instead, I get what I can mostly from two people and a dog, and I suffer with the guilt of the weight I put on them. Every day I feel selfish for being in their lives, but I know their ability to believe me and acknowledge my pain is crucial to my ability to believe myself. Others do what they can, but they each have their own burdens.

Here are some examples of what others have said to minimize my pain:

My former massage therapist on my ex’s Facebook post worried that my dog wouldn’t get enough exercise because he felt I am lazy.

Even after I logged my food and dental care regimen, my dentist refused to believe me because of the state of my teeth. Two years later I found out I had a severe vitamin D deficiency, which can result in tooth decay.

A relative told me I’m “all about drama” when I told her I was going to urgent care.

Someone in an extracurricular group told me that his wife had similar symptoms, but that once her anxiety was dealt with, she was fine. I was in so much pain, I nearly threw up on his shoes. (I wish I would have.)

While participating in a combat-inclusive live action role playing game, I was having some lower back pain and took some medicine. Immersed in the game, I was safe but did not have to focus on the pain: until someone made a sex joke about why I was limping.

Both an ex-boyfriend and an acquaintance have made comments about the fat around my neck, which has been a medical concern and mystery for me since age 16.

I show doctors pictures of the problems with my skin and the overnight differences in swelling/weight and they refuse to acknowledge them as evidence.

This does not even begin to encompass the physical and mental difficulties I face due to this mystery illness.

Living as a Woman with an Undiagnosed Autoimmune Issue

As a woman, there are some other concerns that specifically affect me. First it was infertility and related issues and now it’s the realization that adoption requirements probably prevent me from ever being me a mother since it’s difficult to be seen as an acceptable parent if you have a chronic illness or are over a certain BMI.

But since I have no ‘real, diagnosed’ medical condition, it’s even more taboo to talk about this topic or the way it makes me feel.

Additionally, matters of aging, beauty, and appearance affect me very strongly. My condition has caused my body (including my outward appearance) to deteriorate rapidly. I live in another strange limbo: still getting catcalled and followed by drunk men, still shamed by men for what this illness has done to my body. Neither is at all desirable.

As a motherless woman, my legacy is the way I care for others, the work I do as a writer, and my ability to be an effective communicator.

My illness stifles all of these things that society values about women and that I used to value about myself.

Doctors Like Volleyball

Through this process, I’ve learned that doctors really enjoy playing volleyball with patients’ health. They see a 35 year old with an organized list of 87 symptoms and don’t want the responsibility.

My mental health counselor, who I started speaking with after deciding to leave my husband, was very encouraging of my progress with health care. She could observe my high pain days and my low pain days just like anyone who sees me on a regular basis. I can gain four sizes overnight, so these are obvious changes.

But doctors don’t see me every day. So they send me back to the therapist, who has no choice but to advise me to go back to the doctors.

I saw a really wonderful doctor recently, but unfortunately he was in urgent care and cannot be my primary care physician. I went in after having digestive issues for a week, and with a vacation coming up, I thought it was best to head in. The doctor spent 45 minutes with me and made me laugh and smile; he assessed my condition as best he could and said I need tests to see if I had lupus. He stayed after the clinic should have closed to give me a handful of business card referrals within my insurance’s health network.

He told me to go to the dermatologist first because they could do a helpful skin test.

I went to the dermatologist, and she told me she had “no idea why a doctor would send you to me for lupus.” She looked at my hives and moles and lesions and rattled off some ‘not serious’ conditions, proscribed some cream, and refused to acknowledge that the skin conditions could be symptoms of a systemic problem. Then she sent me back to the referring physician, who I can’t really see unless he happens to be on shift next time I have a flare up.

The Cost of Health Care for the Undiagnosed Autoimmune Patient

Volleyball doctors cost me a lot of money.

I have great health insurance and a comfortable salary, but health care still knocks into my budget considerably.

Some weeks, I have three appointments. That’s maybe three specialists at $35 each. If I have my monthly massage that week, it’s $50 and a $15-$20 tip. Insurance doesn’t cover massages even though they are the single most effective treatment option I have discovered so far.

That doesn’t include the cost of stress: feeling like an ineffective worker while I take a long lunch or when I ask for work at home days that will never come; canceling plans and knowing people will get annoyed with me for that.

Validation From an Elderly Woman in Pain

The ultimate, heartbreaking validation came to me at the hospital yesterday. I accompanied my 83-year-old grandmother there. A chronic pain sufferer herself, she was short of breath. I watched as the health care professionals denied her even the regular amount of pain medication she is accustomed to taking just to get through the day.

She was barely able to string a sentence together. She wasn’t even wearing her glasses. And through all the pain, she looked at me as I was emptying the bedpan that the nurses couldn’t think to get to in a timely manner and remarked with concern on the blotchy, swollen, hive-covered arms exposed by a short-sleeved shirt.

A Look Towards Experiences

I make sure my bills are paid, but I don’t have a huge amount of money in savings or retirement and I’m not sure I really want to invest in that. Why? Experiences will keep me hopeful and alive, and money in retirement probably won’t matter.

Aside from the fact that it seems like a doctor won’t believe I’m in pain until I have organ failure, I saw what it was like for my grandfather to be responsible with money only to see it go to health care and shoddy nursing home facility costs towards the end of his life.

I’ve lived on a very small salary in the recent past, so I understand what a privilege it is to even make enough money to have any say in where ‘extra’ money goes. It’s going to go to spending time with people who do want my company, knowing that I will deteriorate over time. It goes to having meaningful experiences in travel and live action role playing gaming: things that I will do while my body is capable of doing them. It comes down to knowing that I won’t have anyone to leave anything to, and that these lived and shared experiences, in addition to a career I’m proud of, are my life and my legacy.

A diagnosis would help me get by, but at the end of the day it comes down to doing what I can with the resources I have, and that’s going to be the healthiest way I can cope with or without a diagnosis.

What do I want from the people in my life? I want them to listen. Even though I do not have a name for my illness yet, it’s still real: as real as the sudden weight gain or loss, as real as the splotches on my arms; as real as the busted knees and swollen ankles.

I don’t want you to fix my pain. I don’t even want you to listen to me talk about my pain very often. I want you to acknowledge that it exists.

Editor’s Note: This author requested anonymity. It is extremely important to The Geek Initiative’s editors that this site and its surrounding online communities remain safe spaces for our readers and contributors. Therefore, we do accept anonymous submissions (published under the NPC moniker) in some circumstances.

1 Comment

I understand your plight somewhat. I have sicca syndrome, chronic fatigue ,muscle weakness, G.I. problems, GERD, gout, psoriasis, I have puffy fingers that are blue most of the time, and I’m positive for anti dsDNA, anti centromere antibody, and of course , ANA positive every time I’m tested. I’ve lost half of the little hair I had left in the last 12 months or so and I too can barely hold a pen to write or use a key to unlock a door some days. Even the keyboard and mouse can make my hands weak. I too am undiagnosed after being to 24 doctors in the last two and a half years. I wonder how many of us there are, undiagnosed, sick people with clear signs of autoimmunity? I wish you the best of luck in getting a diagnosis and some care that will make your life better. I’ve just about given up because my medical records have been so poisoned with poor practice that I really don’t even want to send them to the next doctor for fear that the next doctor will only repeat what the last 20 something doctors have done which is to deny finding anything and make me look like some kind of screwball. It’s very disillusioning, depressing, and even a bit disgusting.